Tuesday, 3 August 2010

Peristeen - A hard story to tell!

I have always said that I will be open and honest on this blog.
So I have decided that I will tell you about the experiences that I have been having over the past few months, to do with my bladder and bowels.
It is not an easy subject for us, as a nation, to talk about, but I think if we were more open about it, it wouldn't then be such a difficult or embarrassing issue for any of us.
I found myself wanting to find information and talk to people, but not really knowing where to go, so that is another reason why I want to talk about this.

I have had issues with my bladder and bowels for a little while now, but it has been getting worse over the last few months. I was referred to the Bladder and Bowel care team at the local hospital, where I had an appointment with a lovely nurse. She put me at ease and made me realise that this is actually quite a common problem. It doesn't make it any easier though!
After talking through my issues, she decided that it would be better to concentrate on my constipation and try and get that sorted, because that may be having an impact on some of the bladder problems.
The first thing that was identified was that I don't drink enough. Keeping yourself hydrated is really important when needing to keep your bowels regular. So I have increased my liquid intake.
It is actually quite difficult, when you don't drink very much, to force yourself to drink more. But I have started drinking more water and I am actually enjoying water now. In the hot weather we have been having, it has been a God send!
We then talked about my diet and as I explained, at the start of the year, Martin and I decided that we wanted to lose weight, so our diet is actually quite healthy.
By the way..............I have lost over two stone so far!!
The nurse decided that the first path to go down was the Movicol path. I was really very constipated and would be lucky if I was going once or twice a week.
Movicol is a sugar and salt mix and the idea behind it, is to soften the stool, which makes it easier to pass. She wanted me to take one sachet, twice a day for the first three days and then go to one sachet a day.
I did this for the first week and it started to work, but then it turned into disaster. It went too far the other way and caused bowel incontinence............I told you this was hard to talk about!
Apart from the obvious, it was a really difficult situation, because it completely knocked my confidence. I couldn't go out anywhere, because I was afraid of what might happen. Obviously I stopped taking the Movicol. I couldn't face taking it and the consequences of that. Also it is not a pleasant tasting drink, even though I had chocolate flavour!!
I went back to see the nurse and explained what had happened. She said that Movicol isn't for everyone, so we decided that I would try increasing my liquid intake even more, eating breakfast and routinely trying to go to the toilet, whether I needed to or not. She showed me the best way to sit on the toilet, to encourage your bowels to open.
For the first couple of weeks this seemed to be going OK, but then for the next couple of weeks, I ended up being severely constipated again. It had been almost two weeks without going at all.
I was in quite a state and so I had to phone the nurse and ask for some help. At this point, because of the severity of the constipation, the suggestion was to take eight sachets of Movicol in one go. This was what was needed to force me to go. Of course, this filled me with dread. I managed to take six sachets. It was all I could face.
The problem, I find, with Movicol, is that there is no time scale as to when or if it is going to work. You take the sachets and then you just have to wait. I took my six sachets and ended up staying in my house for the next 24 hours as I had no idea what would happen.
I did manage to have some bowel movement, but it wasn't the clear out that I had expected. Over the following few days, I did manage to go a couple of times. I had been told by the nurse that if I still wasn't going regularly, then I should take a single sachet every couple of days. This scared me a little because I still didn't trust what it would do to me. As it was, I didn't do this, because I felt that it might go too far the other way again and I just couldn't face that.
The nurse made an emergency appointment for me and I went into the hospital to see her.
I went through every thing that had happened and I asked her whether Movicol was my only option, because it was clear to me that Movicol would not be a satisfactory solution. It was a big ogre in the corner of my kitchen and I couldn't bear the idea of taking it and the consequences that I would have to face.
The nurse then suggested a procedure that may be possible for me to try - if I was open to the idea. I was at the stage where I was open to any suggestions, if it was going to help my situation.
The system that she suggested is called Peristeen. It is what is known as an anal irrigation system. This did scare me quite a lot, but if it was going to work, if it was going to give me back some control and if it was going to make my life a little more comfortable, then I was willing to give it a try.
There is a separate nurse who deals with this system and it was arranged for her to come out to our house & chat to us. An information booklet and DVD was sent out to me, so that I could learn about it before she came out to us.
When she came, she bought one of the systems with her, so that I could look at it and see how it all worked.
It is done on prescription, so the nurse needed to get the prescription sorted out before I could start it. So it was arranged that it would all be sorted out for me to start the following week. The equipment was ordered and I received it. The nurse came out and I started using the Peristeen system.
It is quite scary to start with, because it is not a natural thing to do, but the more I have used it, the more it is becoming just a part of my daily routine.
It means that I am in control, I decide when I use it, so that I am going regularly and I don't need to worry about it. It is all done within about 30 minutes, so no more sitting on the toilet for up to two/three hours at a time. It has helped with the continual bloated feeling that I would get. I still get bloated etc, but it is nothing compared to what it used to be.
I am only about three weeks into using the system, but it really has made a difference to me. It is not pleasant to do and I need Martin's help, which is frustrating, but compared to how I was feeling when I wouldn't be able to go for days on end, this is worth it.
The following link, takes you to the Coloplast website and they are the company who supply this system.

I know this hasn't been an easy read, it hasn't been easy to write it.
I debated with myself as to whether I should actually list it or not. But I decided that I should, because I want to be able to help other people out there who may be going through the same as me............I just hope I can!


  1. I am a first-time visitor to your blog and new to MS. Your openess is most welcome. Thanks for the insight.

  2. Powerful post! and informative! Kudos!!!

    Caregivingly Yours, Patrick

  3. Hi Amelia,
    Excellent post, thanks for sharing.

  4. Hi Amelia, I work as a specialist nurse for bladder and bowels and I know how difficult it can be to talk about the subject. Your honesty if great and I hope others will read this and seek help/advice wherever possible.

    Peristeen is marvellous, Iv seen such wonderful results with the patients I have taught to use it.

    Kelly xx

  5. wow, i really have to ask where you are - i've had these issues for over 2 years, and have been waiting for to try peristeen for 5 months as my pct don't give scripts for it, it has to go to panel. i literally sit over loo for hours daily, hoping... i don't have ms, but sma with (unusual) paralysis in one leg/slight bowel/bladder loss of sensation. no incontinence, some accidents (just cannot be gotten out of leccie 'chair/hoist/bed/loo in time), and a huge amount of pain. the nurses never seem to care, just tell me i'm doing well. so hard. i have 95%+ weakness, had this since a toddler (45 now)

  6. Hi there, I'm so sorry that you don't have access to this wonderful system. It really has changed my life. I hope that your pct get it sorted soon for you as I feel sure it would give you a lot of relief. I live in south Devon & I have to admit that I am very lucky. I was given access to Peristeen as soon as I was introduced to it & I appreciate that so much. I hate this postcode lottery of what treatments you have access to just because of where you live :(
    Good luck to you, I hope you get the relief you need very soon.
    Love & hugs
    Amelia XxXxX

  7. Thank you for your post. It has given me hope. Like you, I have MS, and I used peristeen for the first time today. I am hoping that it will change my life too. I think it will give me the control back in my life. After several episodes of incontinence something had to give. With this system you can choose when you use it, and I was suprised how easy it was to use. I mnotice that you posted this in Aug 2010 - is it still working for you?

  8. Hi,
    Thank you for this post. I dont have MS but I have a progressive muscle desaise and suffer from EXTREME constipation. I currently take six sachets of Movicol a day and several other laxitives and still only open my bowels about once a week! I've been considering Peristeen for a while a reading this has made me decide to give it a go. Hope it continues to work for you xx

  9. i started useing peristeen today i have had bowel probs for years could not go out if i did made sure there were toilets near were i was going ,had cramps every day it was easyer than i though so hope i get my life back and some relief from the cramps . xx

  10. Hi Amelia
    just found your blog while doing some research into this topic !! My dad suffers with MS and has done for 25 years, he is now 75. We have got to the point where he needs help with all his transfers whether to and from his bed, or most importantly onto the toilet. The toilet situation is now becoming an incredibly limiting scenario, from his point of view he fears going out as he is never sure quite when something is going to happen, and from the point of view of his support network we have to make sure there is someone on hand at all times waiting for that 'momentous' moment, sometimes that can take days !! We are waiting for a visit from the incontinence nurse but in the meantime I have been trying to get familiar with what is available to him. the peristeen system although scary looks a great solution to put control back into his and our lives. I am interested to know how you are getting on with it after a sustained period of time or if you are still using it. I wish you all the best in your struggles with MS, this is an incredibly brave post and a great help to someone like me.

  11. I have had MS for 11 years and have been offered a peristeen today after suffering bowel problems for a couple of years. Just got to have my training now.
    My story was very similar with the movical etc. You are really brave and the more that speak out the less embarrassing this will all be. Great work Amelia.

  12. Hi

    Great post.
    I don't have MS but have a spinal cord injury c6-c7 and as they say have been there and got the T shirt. Just started using a peristeen after years on a cocktail of laxitives/ loperamide that left me with a complete lack of confidence as to when my bowel would next control the situation.. Even after the first use things have improved so I'm hopeful of getting some of my life back again.
    Thanks again for your blog. It's only by sharing these sometimes intimate things that we can all learn.

  13. Fantastic - thank you for the open information. Im a Social Care Worker who is about to start providing this procedure to a service user of mine. I needed a little bit more information than I had - and thanks to you I now feel that I can go in with the nurse and not feel completely out of my knowledge/depth. Thank yi - i will be visiting here again xx

  14. Omg. I love you,........thank u so much for sharing this. I should be starting the parasteen soon. I really wish this helps

  15. I was so scared. But after reading ur story I am so greatfull. U have shared. Such a personal story and it means much thank you

  16. I am just SO glad that three years on and this post is still helping people.....I really wanted this post to help others, it is such a sensitive topic and so difficult for people to be open about but long may it continue!! :-) XxXxX

  17. I have spina bifida. I use bisacodyl rectal fluid. Then use peristeen oir a wash out. Never looked back.

  18. thank you for sharing! I am a nurse passionate in making a difference to people living with physical disabilities. Bowel care is not spoken about however it is one of the most searched topics on the internet for this population! Though I'm in Australia i thought this may assist anyone reading your blog and wondering how they too can make change. Please feel free to contact me my details are within the link below !